Sunday, May 24, 2015

Potential plan re Tues shunt replacement.. to be decided..

I guess if nothing else this past 2.5wks has again validated re shunts that I know what I feel and so many around me have commented they could tell a difference in that it was so obvious to them I didn't feel good and that they hope whatever we do this time works better.
Dr.Bragg has said she felt the TPL Shunt wasn't working at all and that the VP Shunt was not working optimally. I feel like this should be validation to myself to really stick w what I think is wrong.. I know Dr.Bragg was helping me try to stay on top of the headaches and I was/am very grateful to her for that but I do wonder if I should have pushed harder, sooner to look at the TPL Shunt? I guess at the time I wondered but I also knew that shunt wasn't exactly the easiest to test.
Per Dr.Bragg surgery to take out the EVD (see below depending what we decide to do) and replace the shunt(s) is officially scheduled for Tues morning, 1.5days basically!! Even when she rounds she has jokingly teased about my well known excitement at the countdown and potential end in sight to this shunt stay..
I am counting and waiting and as sad as that sounds (it really kind of is, lol) I am excited for Tues. Not so much for the surgery or discomfort that goes w it but for getting freed from Neuro ICU, not having the external drain (see below, depending what we ultimately decide to do) and being able to wash my hair soon. Right now I've been able to wash parts of it in the sink which is sort of gross in itself but is by no means ideal and could use a regular shower! I may just be thee happiest camper around when I can shower and wash my hair again! Ideally I could wash my hair normally before surgery Tues but fairly certain that isn't going to happen.
As far as what Dr.Bragg is thinking for surgery she had been talking about putting the 2nd shunt back in to the Lumbar space albeit I think she would still have routed it to drain in the pleural space though that was 1 option she was considering and I knew by no means the final decision. She had also talked about Valve wise for the shunts a newer valve, made by Medtronic I believe that is similar to the former Medtronic Strata valve we had used at 1 point but she said this one had more settings and if she could get it she felt may work well.
Today (Sun) she came by and had a different thought after talking to her partner, whom I may not like but I appreciate they can swap ideas. Anyways so now she asked me to think about and consider just putting 1 shunt back in place, in the lumbar space (bc I seems to have the most amount of CSF there) and would drain to the peritoneal cavity but we would atleast initially try only placing the 1 shunt again. She commented in a way it would be like coming full circle since when I started seeing her 4yrs ago I had 1 shunt, though a medium pressure valve in the lumbar area.
Valve wise she brought up a prior small valve we'd previously used when we tried having 2 valves on the VP Shunt, I can't remember for sure but think it is something like a 'shunt assistant' and acts more like a barrier to CSF backing up in to the body (say an infection occurs they prefer to have some sort of barrier to preventing that infection from re-circulating I think it was) than it does a valve. Ideally we'd go without a valve but given infection risk it's not an option she really wants to entertain which I can understand.
She did say flow wise using only this very small, device that is a valve but yet isn't really she thought we might be able to get really good high flow drainage (lower setting essentially then even the programmable valves we've used albeit it isn't programmable). This is 1 thing that may be ideal for my body as we know I feel best when I drain a lot.
She said she would likely leave the EVD in place but clamped this way if we ran in to problems like 2.5 yrs ago where I couldn't tolerate 1 shunt we could un-clamp it until we could go back to surgery to replace the 2nd shunt. .. It seems she's really leaving the ball in my court and just said to message her with any questions I have + she would respond. She is not rounding tmrw so I am trying to think this over before I message her anything.
In reality I've had decent results w the Codman Hakim valves is just a matter from our experience they don't work for more than a few months in my case and this last time in Winter we really didn't get great results but perhaps the TPL Shunt was already failing some then? Back in Nov. after that revision I'd felt the best I had in a long time.
I have to admit I am not to keen on coming back to Neuro-ICU nor having to do a 2nd surgery (3rd really this stay) if 1 shunt with this alternate valve didn't work and I feel a little skeptical BUT then I think what if it did work? I really don't worry much about it overdraining as I can literally dump 10-15cc of CSF at a time and feel fine and if we've kept the EVD (drain) leveled I've been waking up feeling much better the past couple days.
I so appreciate that she trusts me to think it all over logically but I also admittedly feel like I know what the right thing to do is (try 1 shunt and keep EVD clamped) but I don't want to do it, lol b/c I want out of N-ICU, to shower and to have a better end date in sight!
I've been talking to my Nurse today who I really like and 2 things she also thought I should ask where 1. how long would we know before 1 shunt was enough or we needed to put back in a 2nd (I think last time a different valve we may have known by the 2nd day but can't remember for sure.) The other question she thought I should ask is, say the 1 shunt isn't enough how many days would we have to wait to go back to surgery again for the 2nd shunt to be replaced?
I am unsure what's up w the potential gallbladder/General Surgery issue ie is she having them look at the area or no during surgery Tues. I guess it doesn't really matter to me it's more that I do have a consistent side pain (but that seems a oddly atypical gallbladder symptom) though it is only apparent when I breathe. I am sure whatever she decides she'll have put thought in to it and talked to whoever she needed to get the best opinion on this.

On a different note it is sort of funny but having talked to a few different friends whose kids have shunts this wk, when they've pm'd me all remark repeatedly if they where in WI they'd have their kids going to Dr.Bragg bc "she sounds like such an awesome Neurosurgeon". Anyone who deals w this specialty knows how uncommon she is personality wise and in that she genuinely seems to care.
A lot of Nrsgn's even the Peds ones don't have the best bedside manner and not always willing to take in to account what the Patient says/feels. She definitely has an ability to think outside the typical 'Neuro' box.
When my local Genzyme drug rep visited at the hospital last wk she happened to be here when Dr.Bragg rounded and Carol said to me after they all figured she was great but she couldn't believe how down to earth Dr.Bragg was, talking about her life outside work and Carol said she could clearly tell she cared. She was impressed =)
Ironically after that she (Carol) was going to talk to one of the Metabolic Genetics drs here at UW that several MPS pts and a Pompe pt where having issues with w/basically being unreasonable about how he'll treat pts/what he'll allow them to do infusion wise.
I'll update either before surgery if I know a certain plan or if nothing else on fb and then a post-surgery update here following surgery.
Wish us luck if you would, say a prayer,
Erica

Thursday, May 21, 2015

Neuro-ICU, still externalized.... booorrreedddoommm

Not really much to update, just hanging out here in Neuro-ICU till the CSF infection clears/we get the all clear to replace both shunts.
Per Dr.Bragg who works with Infectious disease drs (who in turn round each day and I have a chance to ask questions or just get their perspective) we do have a clear CSF cultures and now is just a matter of waiting 7 days to make sure cultures stay clear. This would bring us to Fri so Dr.Bragg was going to look at her schedule and likely we'll put the shunts back in place next wk. Unfortunately next wk is Memorial Day wknd which means yet another day here. By the end of each day I am about at the end of my rope! I like being left alone and there's a reason I live alone!
Since Dr.Bragg talked to them and explained my pressure situation the Nurses have been much more laid back about my getting up and moving around leaving the drain un-clamped for short periods when I stand to dump more CSF (which in turn provides greater relief of symptoms).
Sunday night I went to sleep (have been sleeping in recliner) feeling ok, not perhaps awesome but atleast ok. I woke up at early morning, around 2 throwing up and with a bad headache which kept on throughout the rest of the night till Monday. When Dr.Bragg came by she lowered the drain to -5 which has helped significantly with symptoms and my standing up with the drain open for short periods = between these 2 things feeling the best I've felt in awhile. There are many times I fall asleep despite it being in the recliner that I wake up w a headache but this I can get on top of with standing up to let the drain open and release bigger amounts of fluid.
Now if only we could better replicate this w the shunts! =)

All day Weds I had been thinking it was Tues when really it was Weds but even that I could deal w surgery next wk, thinking maybe it would be on Monday though I do know that is a clinic day for her. What I had completely forgotten about is that this wknd is Memorial Day wknd so my guess is surgery will be Tues or Weds... Hopefully tmrw Dr.Bragg will have an idea but honestly this realization was really, really depressing! Being stuck here on a 3 day wknd is really going to suck. It is also the 1st wknd that Cedarburg Flea Market is held (held 4 times a summer/fall) so will miss that.
Probably in reality it all wouldn't be so bad but some of these Nurses Neuro-ICU drive me crazy, mostly bc some if your asleep will do their ICP # check (every 2 hrs) and the vitals (every 4 hrs) when your asleep and I am not a heavy sleeper so never sleep through this. Some nights are not bad at all given some Nurses will skip 1 or 2 of these favoring sleep over #'s and that really makes a HUGE difference on how the next day is. - thankfully this atleast was changed to everything only has to be done every 4 hrs and at night only at midnight then not till 8am.

I am hopeful when we replace the 2 shunts it will equal having 2 working shunts in place should equal feeling good for awhile!?!
I keep forgetting to ask Dr.Bragg if she has decided on staying w the TPL Shunt or if she's still thinking about putting the shunt back in to the lumbar space where we did seem to have better luck and if we'll stick w 1 shunt draining to the pleural space. I've not heard otherwise so assume she'll go back in to the pleural space to drain with 1 shunt and 1 draining to peritoneum.
Otherwise it's just been a really, really long week! Will update sometime soon,
Say a prayer surgery is early next wk and I don't die of extreme boredom this wknd. =/
Erica